We arrived at the hospital around 11:30 am yesterday morning. Reece’s weight has been very high these last few days and yesterday it was even higher. I pleaded my case regarding his weight for the last few days at clinic as I felt we should be giving more diuretics and they said no. I will not be heeding that advice going forward–I am kicking myself for not just giving Reece the extra medicine and here is why.
Upon arrival yesterday, the attending physician and fellow stopped in to check on Reece. I like both of them very much and trust that they know what they are doing (both were on the day Reece hemorrhaged and the fellow, in particular, is my absolute favorite). They listened to all of our concerns and ordered IV Bumex (a diuretic). He is on the pill form, but they wanted to give it IV so it would start working quickly. They also told me a side effect of ATG is leaking fluid in the body…greeeeeat. I asked if we should hold off on the ATG until we got some of his weight off (still very annoyed that this wasn’t addressed a few days prior in clinic). No one seemed to think we should wait and that running the ATG concurrent with the diuretic would not be a problem. Well, five hours later, the IV Bumex arrived. FIVE. In fact, everything was so behind in arriving it was ridiculous. The platelets he needed arrived (again, very late–you would think this would be concerning to all considering his weight, platelet numbers yesterday, and history of pulmonary hemorrhage) and the ATG arrived. Since they had only one machine hooked up at the time to Reece’s line, the drugs and blood products had to be run back-to-back. Reece actually didn’t start the ATG treatment until 9 pm last night. I went to bed worried about drug reactions and his lungs.
Well, all went well with the ATG during the time it was run. It ran over a period of eight hours to see how well he would tolerate the med. It was turned off in the early morning hours. A few hours later, Reece began to really struggle to breathe and the oxygen mask was placed on to assist him. It is turned up to a very high amount of oxygen. His lungs sound wet. He is in good spirits, but generally not feeling well. He flat-out told me he was not feeling well today. He also requested the oxygen mask himself…seriously, what kid does that? Oh yeah, one that has been struggling with his lungs for the last four months.
I arrived at the hospital shortly before noon today. Reece was resting and I was, I will admit, quite peeved. I will never again fail to follow my gut instinct on this stuff. The lung issues were, in my opinion, totally preventable. Or at least somewhat avoidable. Had his weight been at a normal number, I suspect we would not be where we are at right now.
So, where are we at? The staff has spent the day giving Reece a Bumex drip (so it is constantly running) and other diuretics in an effort to urinate out the extra fluid. As of 7:34 pm, he still is not going to the bathroom. He has urine in his bladder and feels like he has to go, but can not. Maybe we should stop giving him some of his insulin corrections since two weeks ago we couldn’t get him to stop going to the bathroom due to high blood sugars. (Kidding.) He is even higher in his weight. The PICU people are aware of his status and may have him go down to the PICU this evening as a preventative measure so he can be monitored more closely. Everyone is trying to avoid this. The second dose of ATG that was running today was stopped in order to deal with Reece’s lung issues. I’m not sure if that will be run again tonight, but I suspect it will not. I finally asked the fellow if we could put Reece on a high flow nasal cannula (he was on a regular oxygen mask for most of the day) and, if we could not, I would not be comfortable with him staying on the BMT floor. She and I were on the same page, so he is now resting on high flow oxygen on the BMT floor. I also spent the day trying to remain calm with the NP who was dealing with us who happens to be the same NP we had in clinic over these past few days. I was incredibly annoyed…it is safe to say that I am highly disappointed in several of Reece’s care team. I keep thinking of how many times last week I voiced my concern about his weight. No, no, no–it is weight gain because of the steriods. He won’t have lung issues because of it…is what I was told. Um, ok. How do you explain this? The NP basically said it was due to the ATG. ATG my eye. Perhaps part of it is ATG. This is not our first rodeo…we have been watching Reece struggle with his weight and lungs for too long to not see this coming.
I recognize that this post is disjointed and unorganized. I refuse to edit it and make it all pretty. It is a true reflection of how these last 36 hours have felt. Thanks for listening and I sincerely apologize for the angry tone. I am too tired to sugar coat my emotions.
I’ll keep you posted.
- Lungs: to dry out
- Peeing: to happen
- ATG: to have it be tolerated and actually work
- Weight: to come down
- Reece: to be released from this awful and prolonged suffering
- Me: to not go crazy
- Terry: to be able to tolerate me
- Our whole family: release from this process and perseverance
Thanks for listening.